It’s bad enough that Conservatives like Sarah Palin and Betsy McCaughey are spewing wild charges that the House health reform bill will lead to “death panels” and the premature demise of grandma. But what really gets me about these lies—so clearly aimed at frightening seniors and blocking all action on reform—is that they are being advanced in the supposed interest of protecting patients.
In McCaughey’s now legendary battle with Jon Stewart on the Daily Show she identified herself as a “patient advocate” (although most of us know her as a former Lieutenant Governor of New York, vociferous opponent of Clinton’s health care plan and a newly-resigned director of a medical device manufacturer.)
First a little background: I have been a journalist for over 20 years but recently returned to school to pursue a Master’s degree in Health Advocacy at Sarah Lawrence College. Graduates of this program go on to take a wide range of jobs; a sizable portion end up as patient advocates in hospitals, nursing homes and hospice organizations. These trained professionals value autonomy and respect for all patients first and foremost—rejecting the older, paternalistic model of medicine where the doctor always knows best.
In fact, a basic tenet of patient advocacy is making sure all patients have so-called advance directives—living wills, durable power of attorney, health proxies, and orders for life-sustaining treatment—to help guide their care. These advance directives, which are dynamic and can be amended as a patient’s condition changes, allow patients—or if they become incompetent, a designated loved one—to make meaningful choices about what kinds of care they receive.
So, in light of my protectiveness toward the title “patient advocate,” I decided to ask a real advocate—someone who might be part of one of these fictitious “government death panels”—what she thinks about the recent controversy over advanced care consultations.
Julie Buyon was, until budget cuts eliminated her position in April, a patient advocate specializing in palliative care for Bronx Lebanon Hospital in New York. She is also on the board of the Westchester End of Life Coalition and has been party to countless conversations about palliative care and end-of-life issues. Buyon was also incensed by McCaughey’s characterization as a “patient advocate.” “I don’t know who she’s advocating for, all of these issues are about self-determination. They are absolutely not about the government or anyone else making decisions for you.”
Buyon also pointed out that there is nothing new or incendiary about advance directives or end-of-life planning. In 1991, Congress passed the Patient Self-Determination Act, which requires all health-care institutions that receive Medicare or Medicaid funds to provide patients with written information about their right under state law to execute advance directives. The Act also “requires facilities to document in each patient's medical record whether an advance directive has been executed, to educate staff and the public about the right to forgo treatment, and to ensure institutional compliance with state law. Violation of the act can lead to loss of federal funding.”
One of the findings of many studies on palliative care and advance care consultation is that hospital costs, especially those associated with ICUs, are reduced for patients who receive such counseling and make their own choices about end-of-life care. That’s because relatively few choose the extreme (and expensive) measures—cardiac resuscitation, ventilators and other often excruciating interventions—that are used to keep dying patients alive for a few days or weeks. As Buyon told me, these are not life-saving measures—they are death prolonging measures.
Americans, especially senior citizens, are not offended by advance care planning. They overwhelmingly say they want to make choices about end-of-life care—for example, 70% say that there are circumstances in which a patient should be allowed to die; only 22% believe that doctors and nurses should always do everything possible to save the life of a patient.
Still, only about 30% of all hospital and nursing home patients actually have advanced directives. Presumably it’s because they feel uncomfortable talking to their loved ones about death, or their doctor didn’t talk to them about their feelings on the matter while they were still healthy or had adequate mental capacity to make decisions.These are time-consuming conversations, and at present, physicians are poorly paid—if paid at all—for the time it takes to help a patient sort through his or her options.
The House bill seeks to remedy this. It calls for reimbursing practitioners for “advance care consultation” that should take place at least every five years. These consultations can occur more frequently if there is a significant change in the health condition of the individual, including diagnosis of a chronic, life-limiting condition, terminal illness or injury, etc. The legislation also recognizes that when doctors provide advance care consultation and then go on to adhere to the patient’s requests, they are providing quality care.
So what happens when patients show up to the hospital with no advance directives? “I see it all the time and it’s horrible,” says Buyon. Typically, this patient is severely demented and has been transferred to the hospital from a nursing home with a serious infection from a feeding tube or festering bed sore. These patients, who have no decision-making capacity, have been “ping-ponging” between the hospital and nursing facility, says Buyon, and “there is no way to make them better.” Frequently they have no family or designated health proxy to make decisions for them. “It’s like they dropped out of the sky and into our hospital,” she says, adding, “In the absence of advanced directives, they have a very long dying process ahead of them.”
What can this legislation do? “It will encourage doctors to have these conversations because now there is no financial disincentive to do so,” says Buyon.
The House bill doesn’t offer a script for how advanced care consultations should be structured, but there already are good sources for the kinds of things that patients might want to consider in making their choices. Buyon recommends this toolkit from the American Bar Association as a starting point for anyone interested in the topic. It includes some worksheets that ask questions about “discovering, clarifying, and communicating what is important to you in the face of serious illness.” These include; “Are some conditions worse than death?” “How do you weigh the odds of survival,” and “Personal Priorities and Spiritual Values Important to Your Medical Decisions.”
Incredibly, opponents of this kind of advance planning seem to believe that just thinking about these issues is a form of coercion, forcing people to reject life-saving measures. For example, Jim Towey, writing in the Wall Street Journal, calls an end-of-life planning document published by the Veterans Administration’s National Center for Ethics in Health Care the “Death Book for Veterans” and accuses the VA of “steering users to predetermined conclusions, much like a political ‘push poll.’ For example, a worksheet on page 21 lists various scenarios and asks users to then decide whether their own life would be ‘not worth living.’”
The document, which is actually called “Your Life, Your Choices” is, in reality, a comprehensive and thoughtful document that gives people a range of options for exploring their values and beliefs about end-of-life issues and advance directives. It does not “steer users to predetermined conclusions.” To the contrary, near the very beginning of the booklet, on page 6, it highlights two equally valid choices made by two different women:
"I want to be kept alive as long as possible,"
Maria Santini has said on many occasions. "Life is
sacred and has meaning, no matter what its quality."
"When my time comes, keep me comfortable."
Irene Johnson also believes life is sacred. However,
she has often said, "I’ve lived a long and full life. I
don’t want anything done just to keep me alive."
The worksheet that Towey refers to is called “What Makes Your Life Worth Living.” It lists 19 possible factors (“I can no longer walk but get around in a wheelchair,” “I am in severe pain most of the time,” “I need someone to take care of me all the time,”) and then asks the reader to check a box that represents how this factor would affect their desire to live. The choices are: “Life like this would be 1) difficult, but acceptable; 2) worth living, but just barely; 3) not worth living; 4) can’t answer.”
Scary stuff indeed. It would behoove us all to take a look at these documents and think about our own values and beliefs about end-of-life care. Better yet, discuss these issues with family or other loved ones who might have to communicate your wishes to doctors. Unlike the narrow view ta
ken by reform opponents—whose claims of death panels are almost too idiotic to deserve attention—the work being done by the dedicated souls working in palliative medicine is inclusive, sensitive to patient autonomy and hugely important. Giving dying patients a voice is really, the ultimate advocacy.
The situation is now very difficult and many people do not really know what to do, but now we must get down to analyze each of us and see if we can get ahead, as everything depends on oneself, there are ups and downs but the important thing is that while there is life there is hope, a few days ago that antidepressants as vicodin, Lorcet are the most common pills used in these cases but not many of them know the consequences…
In the real world, before all the ridiculous stuff started, many Republicans have been advocates of end of life planning, since it fits with Republican ideas of personal control of their own lives and of avoiding wasteful spending. Several prominent Republicans have been sponsors of bills to provide for end of life planning in the past, and the clause on end of life planning in the Senate HELP bill was introduced by Johnny Isakson, conservative senator from Georgia. This is an issue now only because it is an easy way to create a slogan to confuse the public and increase chances of a victory over Obama that people hope will lead to Democratic losses in the 2010 election, just as opposition to Hilary care was an important part of the Republican victory in 1994.
For people interested in a religious point of view, religious figures as diverse as Pope John Paul II and Reverend Billy Graham have indicated that appropriate planning for end of life management is morally allowable, and that shared planning with family members and doctors is an important part of appropriate planning.
It is unfortunate that cynicism by some members of the political classes has caused this important, previously non-partisan issue to become a political football. It is particularly unfortunate that if the issue becomes a political football it will handicap all future efforts to pass reasonable legislation about the issue.
This is just like the issue of Medicare cost control and effectiveness standards, which may be permanently blocked by politicization as well, leaving exclusionary prices as the only way to prevent Medicare from self-destructing in the near future, since rational policy or increased taxation will be politically impossible.
Conservative writer and political activist David Frum has written some excellent analysis of the mess that Republicans are getting themselves into in terms of future choices by making expedient choices now that will backfire on reasonable conservative agendas in the future.
I watched the Jon Stewart interview with Betsy McCaughey mentioned in this post, and saw everyone in the room, including Jon himself, getting more and more frustrated with Ms. McCaughey because of her refusal to argue about anything concrete. She seemed honestly convinced that this provision, designed to allow people to make these hard choices in advance and for themselves was an excuse for doctors to forgo care to elderly patients.
Great article, Naomi! And isn’t it ironic that Big Insurance also employs a huge number of so-called “patient advocates” who sureptitiously direct patient care in alignment with the profit motives of the managed care companies, rather than the true medical interests of the patients?
Of course, no one is talking about Blue Cross, United Healthcare, Aetna, or Cigna “death panels” because who’d ever admit they exist? Yet every day,at every managed care company, medical decisions are being made or, at very least, are being influenced by people who are not the patient’s doctor. Patient advocates who work for the managed care companies, in the process of fulfilling their noble profession, are nonetheless feeding information back-and-forth to their employers. Information that influences length of hospital stay, treatment options, and other medical considerations that, over time and in many cases, can influence whether a person lives or dies. Yet no one talks about this, nor ever mentions the deep-seated motives that underlie “patient advocacy” as sponsored by commercial managed care entities.
Death panels are a great way to scare people. Maybe if supporters of healthcare reform were willing to stoop as low its opponents, someone could build quite a case that such systems have been firmly in place all along in the profit-driven managed care business model of healthcare in the U.S.
I personally honor and respect the work of truly independent patient advocates. Such people saved my mother’s life when she was prematurely released from hospital several years back with a latent staph infection. Had they not asked the hard questions of the managed care providers who were treating my mother, and then arranged for her re-admittance to the hospital, she’d probably not be alive today. I won’t “blame” commercial managed care for releasing her too early, but I’ve thought of how differently that situation would have been had the managed care discharge planners recommended releasing her when she was “healthy”, instead of releasing her when their managed care protocols said she was “ready.”
Naomi – Thanks so much.
We really need a sober national dialogue on this central issue where we should seek values identification first- then maybe some values congruence? But we need to stop hiding from this issue as a nation.
We need a Dan Rather, Tom Brokaw or Bill Moyers to lead a series of panal discussions with experts and a live audience and call in and e-mail particpation. The dying certainly need to be part of this process.
Dr. Rick Lippin
Southampton,Pa
We have Advanced Directives, we paid (!) our lawyer to include that in our estate plan. We consulted one when my mother was ill, they’re good things to have and not that hard to understand.
I take exception to linking the advanced directive to performance plans. It’s a decision between me/my wishes and my family – not something that some institution rallies it’s employees to adhere to so they can proclaim their high performance rating on a marketing banner.
The whole thing was poorly done. The authors of the bill have only themselves to blame for the hoopla that ensued.
“We have Advanced Directives, we paid (!) our lawyer to include that in our estate plan.”
I completely agree. My wife and I did the same about 15 years ago. It’s not that hard. We have pretty strong feelings about this issue, and we didn’t need to talk to our son or our doctors about it.
There are several of other aspects of this issue that I would like to comment on. First, as I’ve said before, I think it would be helpful if, as part of tort reform, the default protocol in end of life situations and in the absence of an advance directive or real time guidance from the patient and/or the family, allowed doctors to apply common sense and their professional judgment depending on circumstances without having to worry about being sued. In the current litigation environment, the default protocol is to “do everything.”
Second, people should also think about what care they would want or prefer to decline if they were spending their own money, assuming they had it. Take, for example, an elderly person who has several hundred dollars in assets and is facing an end of life situation. For $100K or perhaps $200K, some treatment or intervention could extend your life (actually prolong your death) by another two or three months. Your quality of life would be low. Would you really like to spend your money for this as opposed to, say, paying for your grandchild’s college education or leaving a legacy to a favorite charity or cause? If not, why should your answer be different if someone else (the taxpayer) is financing your care?
Finally, I think we should study how good sound medical practice as it relates to end of life care is defined and applied in other countries. I’m sure there is plenty we could learn. Of course, if we wanted to actually apply the lessons, we would most likely need some substantive adjustments and revisions to our litigation environment.
I watched the McCaughey/Stewart interview. The only thing that McCaughey said that made any sense was her concern that physicians would be paid to make sure that patients FOLLOWED THROUGH with their advanced directives.
Her point was that the legislation might put a physician in the position of trying to induce a patient or family to follow through with a plan that they wished to change. I don’t know how likely this is and how strong the financial penalty would be for the physician.
In general, I am a strong supporter of living wills – both my parents have them, my wife and I do as well. I think physicians should be paid for end of life counseling. I think it is also important to have discussions in the family to understand what people’s wishes are. Children should understand what their parents would want done at the end of their lives.
Also, I would like to put in a plug for a service that one of my partner’s wives (also a physician) provides. She helps patients with cancer really understand their options. In many cases patients undergo chemotherapy that has no reasonable chance of curing them or of even extending their life substantially. The oncologists have a conflict of interest and of course are also trying to sign patients up for experimental protocols. That is all well and good for patients who really want to go through all that pain and suffering for the little extra time they will get, but I don’t think most patients really understand wha they are signing up for.
My last comment should have read: several hundred thousand dollars in assets, not several hundred dollars.
Legacyflyer talks about his partner’s wife helping patients with cancer understand their options. Many cancer patients undergo chemotherapy that has no reasonable chance of curing them or even extending their life substantially.
But if you spend any time on cancer boards, you’ll hear them discussing about “shooting for the moon.” And there will be someone telling them to “go for it.” It’s disheartening. Most patients really don’t understand what they are signing up for.
A new study published in the Journal of the American Medical Association finds offering end-of-life counseling aids last days. Offering such care to dying cancer patients improves their mood and quality of life. It was funded by the National Cancer Institute.
A House proposal allows Medicare to pay doctors to chat with patients, if they desire it, about living wills, hospice and appointing a trusted person to make decisions when the patient is incapacitated.
In the new study, trained nurses did the end-of-life counseling, mostly by phone, with patients and family caregivers using a model based on national guidelines. All the patients in the study had been diagnosed with terminal cancer.
Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.
Patients and their caregivers also could attend monthly 90-minute group meetings with a doctor and a nurse to ask questions and discuss problems in what’s called a “shared medical appointment.” Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.
Accoring to one of the researchers, patients getting such counseling often thank the nurses helping them. They seem to feel a whole lot better knowing there’s someone who’s looking at the rest of them and not just the tumor.
In both groups, hospital stays were rare: six to seven days on average during the patients’ last year of life. It is patients and families in their own living rooms who are dealing with end-of-life care. They’re not in the hospital,they’re at home.
This is about helping people live with the diagnosis the doctor has given. This study reflects on what kind of support people deserve when they’re dying.
Legacy Flyer —
It is my understanding that in the now nearly defunct effort to pay for end of life counseling, the guideline for physicians is that they document that they actually performed the consultation and what they brought up during the conversation. The notion that physicians are required to show that patients and families followed their advice is another confabulation by a serial confabulator. McCaughey, quoting the part of the bill requiring documentation, distorted the intent. As a physician, I am sure you are familiar with requirements that doctors document what they are doing in order to get paid.
The main reason that Stewart did not point this out was that he sometimes seemed to be struck dumb by the falsehoods McCaughey was spewing aggessively and non-stop, making it hard for Stewart to get a word in edgewise much of the time — a considerable accomplishment for McCaughey, as most fans of Stewart could testify.
McCaughey is another example, along with Bachman, Palin, and others, of a new trend: female commentators who propagate misinformation, and then when called on it respond with emotional appeals (i.e. McCaughey’s almost tearful invocation of her supposed deep concern for seniors and the Medicare) and the accusation that challengers are just mean boys being mean.
Ginger,
You say, “I take exception to linking the advanced directive to performance plans. It’s a decision between me/my wishes and my family – not something that some institution rallies it’s employees to adhere to so they can proclaim their high performance rating on a marketing banner.”
Nowhere in the House bill does it say that “institutions” will force practitioners to adhere to someone’s advanced directives. But there have been many, many cases where a patient’s wishes have been ignored–with painful and tragic results. I think everyone–especially you and those who are imagining coercion where there is none in the House bill–should read this important piece from the Annals of Internal medicine http://www.annals.org/cgi/content/full/125/2/149 that tells the story of a woman whose mother’s wishes were not honored. This is what the bill and those who champion advance directives are trying to remedy.
Barry, Ginger, legacyflyer,
Living wills are a good tool for thinking about end-of-life and the choices you might make when faced with devastating illness or certain death. But, locked up in a safe with your will, trusts, etc. they will do no good. If that living will does not go with you in an ambulance or follow you from nursing home to hospital it will be of no help. Having discussions with your doctor, spouse, children and appointing a health proxy or assigning durable power of attorney (these things change from state to state) is the best way to make sure your wishes are honored. As I mention in my piece, your choices also change with changes in your health and age–a living will made at 45 when you are healthy may not express your choices at 70 and terminally ill.
Barry,
I think linking end-of-life choices with saving money is a consideration for many older people–I have heard it many times in the case of long-term care which is paid out of pocket until the money runs out. But it seems ethically wrong to me–and seems to feed into the argument that end-of-life planning is really just a way for hospitals to save money–to add that to the equation. This is exactly what crazies like McCaughey and Palin imagine; Medicare telling old people that if they choose life-saving measures they will have to pay for them themselves!
Gregory,
The article you cite sounds very interesting and supports the work that legacyflyer’s wife is doing with terminal cancer patients. I think it’s very important to have this kind of counseling to help patients realistically think about what entering a new trial or enduring another round of an experimental drug is really doing for them, vs. the researcher. Can you send a link?
Finally, Pat S., I agree that end-of-life issues are non-partisan and would hope that some of the Republicans (like Senator Isakson)would speak publicly about these topics. Most of us have had personal experience with a loved one at the end of life and would welcome thoughtful and non-shrill discussions about the topic.
Naomi
Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer
http://jama.ama-assn.org/cgi/content/abstract/302/7/741?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=end-of-life+counseling+August+19%2C+2009&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
Look. It is already happening to seniors. Liberals are as dumb as rocks and are not that bright. They attack the messenger but never the message, at least with logic and reality. This is where we are headed folks. This is a recent article from the UK’s Daily Telegraph. Same thing happening in Canada. People are so stupid to trust the government.
Pallliative care experts in the UK are charging that
terminally ill patients are being intentionally
misdiagnosed as being close to death in order to
enable doctors to stop treatment and instead
dehydrate the patient to death.
My contacts in
the UK have been
warning me about
the “Liverpool
Care Pathway” for some time and now, here it is in the Telegraph. From the
story:
Patients with terminal illnesses are being made to die
prematurely under an NHS scheme to help end their lives,
leading doctors warn today. In a letter to The Daily
Telegraph, a group of experts who care for the terminally ill
claim that some patients are being wrongly judged as close to
death. Under NHS guidance introduced across England to
help doctors and medical staff deal with dying patients, they
can then have fluid and drugs withdrawn and many are put
on continuous sedation until they pass away.
But this approach can also mask the signs that their
condition is improving, the experts warn. As a result the
scheme is causing a “national crisis” in patient care, the
letter states. It has been signed palliative care experts
including Professor Peter Millard, Emeritus Professor of
Geriatrics, University of London, Dr Peter Hargreaves, a
consultant in Palliative Medicine at St Luke’s cancer centre in
Guildford, and four others.
“Forecasting death is an inexact science,”they say. Patients
are being diagnosed as being close to death “without regard
to the fact that the diagnosis could be wrong. As a result a
national wave of discontent is building up, as family and
friends witness the denial of fluids and food to patients.”
Here’s the thing: Every hospice expert I have spoken with say that palliative sedation
is rarely necessary to stop suffering. If some 16% of dying patients die under
sedation as the story states, something is very wrong.
I am sorry, but this is a direct consequence of the rejection of human exceptionalism
and the embrace a quality of life ethic. Indeed, it shows where utilitarianism leads,
where in the drive to stop suffering we end up turning on the sufferer. Think about
it: How often these days do we hear bioethicists bemoaning the “drawing out of the
dying process,” when what we are really discussing is extending life?
Not coincidentally to our discussion of Obamacare, it was pushed by the NICE
utilitarian bioethics board–the very kind that the highly influential former
Sen. Tom Daschle wants for America–which could arise from the proposed
cost/benefit boards in the current health care plans:
Developed by Marie Curie, the cancer charity, in a Liverpool
hospice it was initially developed for cancer patients but now
includes other life threatening conditions. It was
recommended as a model by the National Institute for Health
and Clinical Excellence (Nice), the Government’s health
NHS Meltdown: Death Panels! » Secondhand Smoke | A First Things Blog Page 1 of 4
http://www.firstthings.com/blogs/secondhandsmoke/2009/09/02/nhs-meltdown-death-pane… 9/10/2009
The Golden Rule is that there are no golden rules.
I do not know if it’s just me or if perhaps everybody else encountering issues with your site. It looks like some of the text in your posts are running off the screen. Can somebody else please provide feedback and let me know if this is happening to them too? This might be a issue with my browser because I’ve had this happen before. Thank you
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Hi Michael–
Have you tried using a different browser?
Also trying Googling “WordPress” (which is what I use to publish HealthBeat) and “text running off screen.”
I’ll also try Goggling.